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Where did this fibromyalgia come from????

kyapupkkyapup Posts: 54
edited 06/11/2012 - 8:39 AM in Chronic Pain
X( I had my spinal fusion in Dec.'06 the pain was just awful! But I recovered (on my own, no ins.) and in nine months went back to driving a school bus. Last year the pain intensified and I needed meds so I took an early retirement, which broke my heart. I started to feel a little better, walking more, stationary bike, etc., then the knee pain started. Severe pain, worse than the perm. nerve pain I have to live with. Someone told me it's fibromyalgia, that there is no cure and it's caused by chronic pain.

So that means to me that for all the pain we have already gone through we get rewarded with more of a different pain.
Can anyone explain this to me?

Thanks, Donna



  • hi donna
    believe when i say i know what your goin thru
    i have found a neuro doc who finally put me thru tests alot of tests alot of exams ....
    i have alot of back problems disc stuff..but after the esi injections i had 2 i kept getting worse and thru all the docs no one was listening...they all kept sayin just my back issues..but i said no one has the flu for 6months and all the other hell that comes with fibro.. i worked 2jobs and ran my house now my days are filled with pain..
    i feel like i have blood pressure cups on or weights strappped to me legs arms neck...knees and alot of swellin..my feet and ankles hurt...
    it takes everything i have to get out of bed everyday..
    i am seeing a rheumo doc this wk hoping w/few docs they can help me find something or some way to get thru the day
    i have tried meds and none have work..
    i can deal with the back pain but with this fibro theres so much that comes with it...
    search for a doc to help ya if poss..
    not many ppl or docs out there that think this is real believe me ive met them...
    go to library and read an read..
    i have recently having disc issues in lower back but when i get this fixed i will get back in the pool...
    heated pool helps alot..
    i have lost my mind that was very sharp..
    its very depressin for me and my family..i have lost that active full of life person and i miss her alot
    but ya gotta get up everyday and move..stretch..walk when it hurts like hell...
    there are alot of ppl with this fibro hell...everyone is different and some that have had it for many yrs just say oh i got it ya just learn to deal with it..
    i dont feel anyone should make light of this hell fibro it is alot to deal with and for alot of us it hearts like hell not to have understanding ppl around for support..
    ya cant lay around ya got keep movin...
    take care
    and im here for ya to vent as ya see i do it alot...
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • Was that someone who told you it's fibromyalia a qualified physician who did a hands on examination? If not, I wouldn't get all freaked out about it just yet. If you haven't seen the doc about this, the next best thing would be to get an appointment.

    I hope this doesn't sound callous and insensitive. I've just seen too many people "diagnosed" by well meaning friends, relatives, co-workers and Internet Diagnosticians. Generally these well meaning individuals are way off the mark and confuse the issue more than they help it.

    Sorry to hear you hurt so much.

  • X( This is in reply to "c" with the cute pup. It was a so-called reputable rheumatologist that finally diagnossed me with fibro. I never listen to laymen and their opinions. He put me on Lortab 5/500 4xday along with 20mg. of prednizone 2x day. It was hell on my system. My blood pressure shot up so high that I almost lost my job. My Blood sugar was very high and I am not a diabetic. My weight increased by 40 lbs.

    The prednizone was causing me to lose my job and probably my life also with b.p. so high. I don't think any of these doctors know enough about this dreadful new disease and we are paying for it. I love Dolly, but I'm gay and I have enough rainbows in my life, the fun kind, when I used to have fun!

    Donna ;)
  • Donna - I don't know where all that anger came from. You said "someone" told you you had fibro. You didn't say you were diagnosed with it. Don't take it out on C -- she was just trying to help you feel calm until you got a diagnosis, which you didn't say you had. BTW - I was 'diagnosed' by a certified rheumatologist years ago with fibromyalgia. In my case, I think it's the biggest load of BS I've ever heard. The stuff they tell you when they have absolutely no idea what is wrong. Until they come up with a definitive test for this disease, I'm living my life as though I've never heard of such a thing.


    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • >:D< So sorry if anyone mistook my anger as being directed at "C" but it was not. The rainbow comment was just a joke. I am gay and I thought someone would get it! I am angry at all the Doctors I saw with this fibro. Especially the final rheumatologist who did a complete exam and blood work I had to pay out of pocket for. He made me come in every month to be checked even though he knew I had no insurance. I was still working at the time. He was the only rheum. in my area and I cannot travel far because of my back. He was such a mean arrogant person that his nurse apologized for his attitude to me.

    Today has been one of the worse days since this illness from hell came back out of remission two weeks ago. This time it is attacking my knees and left wrist. I had a dentist appt. and had to pull over and get out of the car and walk around to make the pain ease up. By the time I got there I had my friend meet me there because I could not get out of the car. Then I had someone with a higher vehicle drive me home. This is truly hell. The worse part is my family lives in Ohio and I am in N.Y.state. And I cannot travel to see them, and they can't afford to come here for the holidays. I truly try to be grateful for what I do have, two healthy kids and a family that loves me, but living in this constant pain makes life very difficult some times. I am sorry if I angered anyone on this forum, it was not my intent. I like alot of the people on here and would like to have friends to relate to. Alot of my old friends just do not understand.

    Sorry this was so long, I just wanted to straighten out this misunderstanding.

    Donna #o
  • I did not take offense to your comments. No need to apologize. I can understand the frustration. As Linda pointed out, I was concerned that you had not been diagnosed by a qualified physician and wanted to way lay potentially unfounded fears. Sorry to hear that you were diagnosed by the rheumatologist and that he isn't the most amiable person around.

    One thing I'd like to mention, is how a dear friend of mine combated her fibro. She suffered terribly from fibro and had tried medication after medication to combat the pain. She hooked up with the same neurologist that was treating me and he sold her on the idea of controlling her pain via diet modification. Since it was a huge step, her husband agreed to do the same thing and work it as a family. Within 30 days she was off all medications and was beginning to feel better. By 3 months, she was free from the worst of the fibro pain. It has been over a year now and she is still going strong and looking and feeling great.

    Don't sweat the holidays. Remember as the song lyrics say "And if you can't be with the one you love, Love the one you're with".

    Hope things look up for you soon.

  • Hi Donna,

    A friend of mine was diagnosed with fibromyalgia a few years ago. She followed the doctor's instructions initially; she took all her meds, put on pound & pounds, had to lie in bed for much of the time, lost her long-term job and basically, she allowed it to control her life.

    After over a couple of years of this lifestyle, she decided to take control herself. She began by modifying her diet, then gradually stopped taking her meds and finally, began to exercise.

    Although she still has bad days, she's now managing to hold down a p-t job. She's lost all the weight and although she says it's sometimes painful, she's back to living her life relatively normally!


    NB I read somewhere that caffeine is bad for f-m & exercise is good for it - I'll try to find the ref for you.

  • an interesting post!!
    hope you are feeling better soon Donna
  • :H Hi everyone! I am really glad all of this got straightened out. I also believe that exercise helps everything. I was what some people call a gym rat. I was there every day, Even after my fusion when the Dr. gave the o.k. I hired a personal trainer schooled in back problems and working out. It was extremely helpful. I felt like my old self again. Then the fibro started. Initially the Doctors I saw thought I was lifting weight too heavy and that was causing the joint pain. I had to stop exercising because with the joints so painful I couldn't workout anymore.

    I will speak to my new primary whom I really respect and see what she thinks. Thanks for all the advice, I will run it by her. And good luck to everyone else suffering with this awful thing. Maybe some day they will find out what causes it and how to treat it.

    Have a good day....Donna (hi Tony, how are you?)
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